Friday, May 19, 2006

Last night we got "the phone call" from Home Depot letting us know that the fridge that we ordered _over a month ago_ would finally be delivered to us today. Well, it did actually come and it is gorgeous! Lovely, shiny beast...we love you!

Thursday, May 18, 2006

Argh. It seemed to both Ralph and me that my rash was cooling down and my energy was increasing. We thought it might be a sign that the GvH had cooled down enough so that I could begin to come off the steroids or get taken off them completely.

Nope.

So, the rash DID cool down and I did have more energy, but apparently the GvH decided to go elsewhere--my liver. Nothing hardcore still, but Lister saw that my liver levels were even higher than they were 3 weeks ago and decided to put me back on CellCept (a 3rd immuno-suppressant). He said that he wants to do this first before pulling me off the steroid. I guess it's like a safety net--make sure my system is calm before trying to slide out the steroid slowly from below (I'm imagining those guys who grab the table cloth and pull real fast so that the plates stay on the table). However, it sucks now, because I'm probably going to have the most energy that I've had since the transplant, AND be the most susceptible to infection. *Sigh.*

Monday, May 08, 2006

Last October, Juan Carlos and Ariadna got married and for their wedding gift, I offered to give them a painting. The following weekend, we got together for a couple of hours for poses to paint a portrait of them. This weekend, I finally presented them with the finished product.

Thursday, May 04, 2006

Actually, it's my first shower in over 5 months!! Since November 26th, I've had a port in my neck for the nurses to get quick and painless blood draws. With the appointments slowing down to once every 2 to 3 weeks, I wasn't sure it made sense to keep it in. For those of you I haven't spoken to about this directly, it was essentially an IV line that accesses my jugular vein. It was clamped down on my collarbone and sealed with a clear plastic "dressing." It was one tube coming out of me, but then it splits into three tubes to allow for multiple medications or IV bags to be attached to me while I was under treatment or in the hospital.

In any case, after talking with Lister about it on Monday, we decided that we could probably safely take it out now. So, he says, "We'll do it right now if you want. Hold on..." and he exited the exam room. I'm thinking, "HUH? Uh....don't I need to go the surgery area or something?" He came back in with the last nurse there in the office that evening. She says to me, "Don't worry, it won't hurt. Now, turn your head away and exhale." If someone had told me that you could have 6-7 inches of tubing pulled from your jugular and barely feel it, I would NOT have believed them. However...really, I barely felt it. Just a sliiiiight pinch and then the pressure of her hand on my neck to make sure that there wouldn't be any bleeding. And there wasn't any! No blood on the tube, no blood on the gauze. Bizarre!

Needless to say, the pleasures of not having my tubes to worry about are great. I couldn't shower before because the dressing couldn't get wet, which meant months and months of baths. Also being careful not to roll over on them in the middle of the night and accidently pull them out (which the doctors fill you with stories of folks who have done just that). Not to mention that anytime I looked in the mirror or got together with a friend, there was this glaring reminder [of the obvious], and it's really getting too warm out to wear turtlenecks all the time.

Interestingly enough, I put on a tank top today and barely noticed my the scars on my chest. I'm just so happy to not have the port sticking out anymore that all other marks on my chest seem minimal. To celebrate, tonight, I'm baring CLEAVAGE.

Monday, May 01, 2006

Sometimes, like today, I've had it with cancer and being sick. I DON'T WANT TO BE THE GIRL THAT HAS CANCER ANYMORE. I'm done! You hear me, Mr. C?!! Bugger off. Find SOMEONE ELSE.

I'm tired of worrying about every little pain. I'm tired of being TIRED ALL THE TIME. I hate looking in the mirror and seeing this bloated rash covered face THAT'S NOT MINE. I want my hair back. ALL OF IT. I want to be able to look at summer blouses and not immediately think about whether or not they will cover all of my scars, before I even check for my size. I want to be able to eat spicy food and not worry what it will do to the inside of my mouth or my esophagus. I want children to be able to hug me without having to recoil with the fear of the germs they are carelessly giving me. I want to forget that I've ever had this disease.

It's days like today when I want to find the fabric of the world and bunch myself all up in it, kicking and screaming--thrashing about like a fish out of water and screaming like a banshee.